To Other Parents of Children with SMA, Here’s My Advice for You

My wife and I sat dumbfounded in our car in the hospital parking garage. The noises of the city hummed outside, yet our world only consisted of the words that weren’t being spoken. Our 14-month-old daughter sat in her car seat, copying the silence that filled the car. She knew something was awry.

We had just finished a string of tests looking to see if she had spinal muscular atrophy (SMA). The doctor told us he couldn’t diagnose the disease without genetic testing, but his demeanor and eye language told us the truth.

A few weeks later, the genetic test came back to us confirming our worst fears: Our daughter had type 2 SMA with three backup copies of the missing SMN1 gene.

Now what?

You might be asking yourself the same question. You might be sitting dumbfounded as we did that fateful day. You might be confused, worried, or in shock. Whatever you’re feeling, thinking, or doing — take a moment to breathe and read on.

The diagnosis of SMA carries with it life-changing circumstances. The first step is to take care of yourself.

Grieve: There’s a certain kind of loss that occurs with this type of diagnosis. Your child won’t live a typical life or the life that you envisioned for them. Grieve this loss with your spouse, family, and friends. Cry. Express. Reflect.

Reframe: Know that all is not lost. The mental capabilities of children with SMA aren’t affected in any way. In fact, people with SMA are often highly intelligent and quite social. Furthermore, there’s now treatment that can slow progression of the disease, and human clinical trials are being done to find a cure.

Seek: Build a support system for yourself. Start with family and friends. Teach them how to care for your child. Train them on machine use, using the toilet, bathing, dressing, carrying, transferring, and feeding. This support system will be a valuable aspect in taking care of your child. After you establish an inner circle of family and friends, go further. Seek out government agencies that help people with disabilities.

Nurture: As the saying goes, “You must put on your own oxygen mask before helping your child with theirs.” The same concept applies here. Find time to stay connected with those closest to you. Encourage yourself to seek out moments of pleasure, solitude, and reflection. Know that you’re not alone. Reach out to the SMA community on social media. Focus on what your child can do rather than what they can’t.

Plan: Look ahead to what the future may or may not hold, and plan accordingly. Be proactive. Set up your child’s living environment so that they can navigate it successfully. The more a child with SMA can do for themselves, the better. Remember, their cognition is unaffected, and they are keenly aware of their disease and how it limits them. Know that frustration will occur as your child begins comparing themselves to peers. Find what works for them and delight in it. When embarking on family excursions (vacations, dining out, etc.), make sure the venue will accommodate your child.

Advocate: Stand up for your child in the education arena. They are entitled to an education and environment that best suits them. Be proactive, be kind (but firm), and develop respectful and meaningful relationships with those who will work with your child throughout the school day.

Enjoy: We are not our bodies — we are much more than that. Look deep into the personality of your child and bring out the best in them. They will delight in your delight of them. Be honest with them about their life, their obstacles, and their successes.

Caring for a child with SMA will strengthen you in untold ways. It will challenge you and every relationship you currently have. It will bring out the creative side of you. It will bring out the warrior in you. Loving a child with SMA will undoubtedly embark you on a journey you never knew existed. And you will be a better person because of it.

You can do this.

Sincerely,

Michael C. Casten

Michael C. Casten lives with his wife and three beautiful children. He holds a bachelor’s degree in Psychology and a master’s degree in Elementary Education. He’s been teaching for over 15 years and delights in writing. He is the co-author of Ella’s Corner, which chronicles his youngest child’s life with spinal muscular atrophy.